Quote:
Originally Posted by amycompton
Porkette,
I was wondering what your neurologist was like and how you ended up seeing a Neurosurgeon. Usually you need a referral for that and I know mine would probably laugh at the idea. Also, I haven't had a ton of grand mal seizures over the years, probably less than ten in about seven years or so (i can't really remember), though a previous neurologist diagnosed me with partial sz when I was a good bit younger which I hear can lead into grand mal seizures. I was on lamictal for those and depression and this new neurologist said that it probably stopped me from having a lot more grand mal seizures, but just wasn't doing the job completely so he added something on.
What kind of tests did they do to decide to take out part of your hippocampus? I went thru pre nursing so I'm familiar with its functions.... That must have been a pretty big decision to make that decision and for your doctor to think it was the best way to go. How often we're you seizing? Did meds not help?
I've never really thought about the time of year I had sz. I just had one in April, one in December I think, another in february maybe, one hiking in the mountains, and I honestly cant remember the other times. I had a ton of partials when I was younger (young teens or a little younger I guess is when they started).... But no one could ever catch them on an EEG.
I'm scared all the time now bc I don't think it's simply epilepsy and that tacking on another pill will be the fix. And most everyone on this site probably knows insurance companies pretty much stay away from us; I'm a little lost.
Any more thoughts? Anyone???
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I'm sorry if you have mentioned this b/c I mostly skimmed, but have you been checked for pheochromocytoma? I was worked up for that several times even though my symptoms were not so severe. Long story short, my neurologist thinks I am having seizures that cause elevated heart rate, elevated blood pressure, etc (autonomic seizures, I think). However, when I have a 'spell' my HR goes up to about 150, I can't imagine a resting heart rate of 170 and even further I can't imagine a doctor not doing anything about it
I hit the 170's once and wanted to puke and die LOL Totally different than when I'm exercising and hit 170, hard to explain why I can handle it in once instance but not the other. Then I get the shakes really bad, it feels like I'm being injected with straight adrenaline.
I have never had a typical 'seizure' and I honestly think he's just guessing BUT my EEG had some abnormalities on it, just not certain they were full on 'seizure activity' vs abnormal spikes. That's not my forte and he didn't give a lot of specifics. I will say I haven't had a big bad spell since I've been on the (really low dose) med for seizures. I've had a few small ones, but nothing scary. It did take a few years of 'oh you're anxious/depressed/panic attacks/etc' before I found someone who really cared to try and figure it out.
BUT in your shoes, with the long-term, chronic nature of your heart rate, I would look into autonomic issues (if you are into googling w/o freaking, that is, I know it's hard to decipher medical issues w/o internalizing them and self-diagnosing)... neuroendocrine disorders/pheochromocytoma is what I'd look up if I were you.
Good luck, hope you find some relief
